• follow up I actually have talked to my surgeon, a radiologist, & have apt with another and dr about the hormones, but likely all say same

    Asked by Doberwomyn on Monday, January 7, 2013

    follow up I actually have talked to my surgeon, a radiologist, & have apt with another and dr about the hormones, but likely all say same

    I know that it is standard and really don't expect to get anything else except more details which is good, but I was interested in personal experience

    8 Answers from the Community

    8 answers
    • SueRae1's Avatar

      I can't speak to hormones as my cancer is triple negative, but I can answer your other questions.

      1. Radiation treatments are given 5 days a week for 6 weeks. You will get tattooed and have a walk through treatment right before you start. The treatment itself takes about 5-7 min, the changing and set up can take up to half an hour (after the first week, I instinctively knew how to position myself). The nurses will give ointment to help the area heal (I got hydrophor) but you will still burn and blister after a few weeks, at that point they will show you how to treat and dry the blisters. You will not be able to wear a bra after about 2 weeks - I bought camis with Lycra - and mastectomy bras - I wore long sports bras for almost year, as the band on regular bras hurt.

      2. If they will be administering treatment via infusion I recommend you get a port. I waited 8 weeks - big mistake, by veins were rolling, insertion was painful, and both my arms were black and blue.

      3. I had a lumpectomy with large margins -I still have some pain in the area two years after the procedure, not very much just occasional per-menstural like pain. Also there is still scar tissue floating around in there.

      over 5 years ago
    • nancyjac's Avatar

      Just keep in mind that radiation techniques can vary significantly from one radiologist to another. Some do tats, some don't. some use a bolus, some don't. Your duration of treatments may be different, both in terms of numbers of treatments and duration of each treatment. Radiation does not require any infused treatments.

      over 5 years ago
    • Nancebeth's Avatar

      It was strongly suggested to me to take the Tamoxifen, as my cancer was ER+ and PR+. I did it for 2 months but the side effects were intering too much with my quality of life. The recurrence chance percentage was only going down by about 4% byt taking it for 5 years so I decided to take my chances and have a better quality of life. I already did the bilateral mastectomy and chemo.

      over 5 years ago
    • karen1956's Avatar

      I was Dx almost 7 years ago so things might have changed.....but here is my story....bilat with tissue expanders....chemo (TAC x 6), 25 rads (everyday mon-friday....and they used tattoos to mark the field...really just dots)...and then started AI's 3 weeks post chemo...I rushed through everything....There are different chemo protocols....I had node involvement....ask questions till you are satisfied with anwers...

      over 5 years ago
    • Daytonagal's Avatar
      Daytonagal (Best Answer!)

      Ask lots of questions and make them explain any big words. If you are not comfortable with anything anyone is doing, speak up...loudly. MY radiologist had a very bad habit of physically examining me with no warning, no gloves and not washing his hands. I broke him of that habit with a few well placed slaps on the hand. Let them know about any discomfort no matter how slight and speak up.

      over 5 years ago
    • MsScribe's Avatar

      Nancebeth and I had the same experience with Tamxoifen, and I have other friends who took it and also had quite sever side effects. Discuss the risk factors in length with your Dr. make sure it's really going to lower your risk to take it if offered.
      I did not have radiation as I was a double Mastectomy with clear margins. ( I also had NH Lymphoma 18 months later.)

      A year after chemo, I have severe flashes and sweats that cause my heart to race but as with most breast cancer patients, I am banned from hormones :-)
      Good luck - remember you can do this!

      over 5 years ago
    • Nellie's Avatar

      Take someone with you!

      over 5 years ago
    • Nomadicme's Avatar

      I'm on Tamoxifen and I hate it. However, I'd hate my cancer returning worse. The original paper that established 5 years being the golden time frame for taking Tamoxifen, showed prolonged survival for the cohort of women that were on Tamoxifen, year by year. A recent study has shown 10 years to be even better. Of course, these days Aromatase Inhibitors have been shown to be better, and given your age I suspect that's what is recommended. That's recommended for 5 years now, who knows if longer in the future.

      What stage are you? Of course the lower your stage the lower risk of metastasis, so that's something you could play with. No oncologist is going to recommend no AIs given that in their eyes it's a relatively mild therapy that has a lot of benefit. If you educate yourself to the pint where you can have an honest talk about benefits vs survival rates for your stage with your oncologist, then it's worth seeking that opinion. But if you're uninformed and can't talk their talk, why waste your time and/or money? (Unless it makes you feel better,,which is always worthwhile).

      over 5 years ago

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